Abstract
Background: The average life expectancy from diagnosis with Alzheimer’s dementia is 8-10 years, however once the patient reaches stage 7 or above on the Functional Assessment Staging (FAST) scale, life expectancy drops to 6-12 months. The European Association for Palliative Care identifies that palliative care needs for patients with dementia as different from other patient groups. They are currently developing guidelines for Advanced Care in patients with advanced dementia. St James Hospital’s Integrated Care Programme for Older Persons (ICPOP) has successfully worked with advanced dementia patients to manage medical and behavior symptoms in the home. We have noted the need for a joint care model between ICPOP and Community Palliative Care Teams (CPCT) to manage the symptoms of advanced dementia, carer stress and to initiate appropriate end of life care.
Aim: Focused on keeping patients at home, a joint care model with ICPOP and Our Lady’s Hospice Harold’s Cross CPCT was formed. This model includes 3 levels of care, with level 1 lead by ICPOP, level 2 joint care and level 3 lead by CPCT. The aims of our services are: To provide multi-specialty management for community dwelling older persons living with the end stages of dementia. To provide person centered care with an effort to reduce the risk of a crisis emergency department (ED) attendance and hospital admission. To develop models of integrated care for frail older adults in the end stages of dementia and disseminate these learnings at a national and international level.
Inclusion criteria include patients with advanced dementia who have reached a FAST scale of 7 or over, residing within the St James’ ICPOP catchment area, and 1 or more medical complications from their dementia. Patients and caregivers have agreed that acute hospital transfer or life prolonging interventions would cause distress, would not improve quality of life, have a high probability of being futile and/or are not in keeping with the patient’s previously expressed wishes.
Methods: Consent was given by patients’ family members or primary care givers. An initial assessment of each patient is performed to gather baseline information, including age, date of dementia diagnosis, comorbidities, baseline care needs using FAST score and Global Deterioration Scale. Primary outcomes include the number of visits required by each care team, length of time on service, referrals to other services, medication reconciliation using STOPP/START criteria, carer stress indexes. Secondary outcomes include place of death, any hospital admissions, ED visits throughout our intervention.
Conclusion: Through this new joint care model we hope to optimize end of life care for patients with advanced dementia in the home. As there are no set guidelines for palliative care for end stage dementia, we are auditing our service to evaluate our efficacy. We hope with our unique service we can set a precedent for giving optimal end of life care to our patients and their caregivers.